Oftentimes, parents of special needs children experience isolation.
Raising children with special needs can be both challenging and rewarding, often within the same day (or even hour).
Our emotions as special needs parents are complicated. We can simultaneously feel like giving up and also be ready to go to the ends of the earth for our children.
We experience high highs and low lows. We fight battles for our kids to get them services, appointments, accommodations, understanding, and acceptance.
We often fail and feel hopeless. Sometimes the littlest bit of progress sparks intense pride and joy.
There is no textbook for parenting a child with special needs. We are left to navigate this journey without clear instructions.
Many special needs parents deal with feeling isolated. We long to find others that can relate, and that can reassure us that we are not alone.
Even more so, we wish that we could still hang out with our friends from before our child’s diagnosis. We miss the way things were.
We want to still be included and have friends, date nights, parties, casual hangouts, and happy hours. That might make us feel a little guilty.
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But it is not always possible in our new role as the parent of a child with a disability to meet friends, buy tickets to a show or even attend an informal social gathering. Things are different now, and we feel more alone.
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The Harsh Reality About Special Needs Parent Isolation
Our social circles change
When our child was first diagnosed, we were thrust into a whirlwind of appointments, specialists, treatment plans and therapy.
By the time we came up for air, we probably realized that the people with whom we surrounded ourselves had drastically changed.
READ: THE ELEPHANT IN THE PLAYROOM: ORDINARY PARENTS WRITE INTIMATELY AND HONESTLY ABOUT RAISING KIDS WITH SPECIAL NEEDS
Being a Special Needs Mom is Lonely
Instead of playdates at the park and chats with other moms while the kids run around, we are now spending time in waiting rooms or driving back and forth to appointments.
Those bonding moments with other parents at your child’s school party or Halloween parade are now spent either supporting your child or waiting ever vigilant in case he/she needs you.
There are no casual invitations to meet for a drink later with the other parents because your child is not a part of their kids’ social circles.
The isolation your child feels because he/she is different and not fully included with his/her peer group now extends to you as the parent.
Our energy levels change
While we fondly reminisce about our social lives before becoming a special needs parent, the reality is that we just don’t have the energy we once did.
We may be physically exhausted from caring for our children – we now have to lift, bathe, feed, change and literally chase our kids to keep them safe.
Our children may have medical needs that we manage and their personal care is still our responsibility, even if our children are physically growing.
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Our emotions take a heavy toll on our energy. We live with an underlying anxiety and hyper-vigilance, ever ready to battle the next challenge that presents itself for our children.
We attend meetings, therapy appointments, spend hours on the phone, and have notebooks and paperwork a plenty.
We worry that our children will not be accepted, or worse, bullied for being different. We fret about their futures.
Our mental energy is often depleted and we find it easier to play it safe and not risk the disappointment of unsuccessful social outings.
Some of our isolation is because we find it easier to just stay home.
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We live in defense mode and are too tired to make the sustained effort to join social circles.
After all, it will be mostly our responsibility to keep up with it since we are not naturally standing on the sidelines or helping at school.
We aren’t able to casually make connections with other parents.
The offers to help dwindle
As our children get older and their needs seem more pronounced, it is more difficult to find babysitters or even family members to watch them.
We observe that other parents seem to regain their social lives as their children get older and a bit more independent. We watch as groups of moms form bonds and enjoy their girls’ nights out.
We turn to the internet, desperate to find others who are stuck at home, unable to leave their medically fragile or behaviorally challenging children with babysitters.
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Our marriages often become strained because we rarely have time to do anything as a couple, choosing instead to tag team parenting duties in order to shower or spend a little time with our other children.
That’s if we even have a spouse. Many of us are single parents doing this demanding job all on our own.
If we have other children, they often feel the isolation just as acutely as we do. They miss participating in extra curricular activities or, if it works out that they are members of something, we are rarely able to support them as a family by all of us showing up.
We feel so utterly alone, isolated and cut off from the rest of the world as special needs parents.
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The Effects of Chronic Stress and Special Needs Parent Isolation
Mental burnout
The ongoing effects of feeling isolated and being a lonely special needs mom can lead to more severe consequences.
Many parents of special needs children experience mental health issues themselves, such as anxiety and/or depression.
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Living in a constant state of defense mode and hyper vigilance causes mental fatigue and post traumatic stress symptoms similar to that which combat soldiers experience.
The residual effect of chronic stress may lead to feelings of hopelessness, heightened anxiety or panic attacks.
Isolation compounds these symptoms as parents of special needs children feel alone in their struggles and are unable to see an end in sight.
Physical issues
In addition to the mental fatigue associated with ongoing stress and isolation, special needs parents may experience physical health issues as well.
The negative impact of stress on our physical well-being may include a decreased immunity to common colds and flus and an increase in back and neck pain and headaches.
Other chronic health problems associated with stress are affected glucose regulation and immune functioning, making special needs parents more susceptible to contracting illnesses.
Special needs parents often try to manage their challenges alone. The mental and physical effects of isolation and chronic stress need are damaging.
How Do Special Needs Parents Deal with Isolation?
Find others who can relate
There are many special needs parent support groups, both online and in your local neighborhoods.
It is crucial for you to find other people who can relate to the struggles of feeling isolated and stressed about raising a child with special needs.
Often the connections and camaraderie made online between special needs parents are what enables us to feel less alone.
There are also more than likely local support groups. Even if you don’t feel like you can ever attend anything in person, connect with them online.
This way you can ask about services, doctors, therapists and other questions that may pertain to care for your child.
Research qualified caregivers
This may not be as easy depending on where you live. However, it is worth some extra effort to research and ask around to find someone qualified to provide care for your child.
Care.com has a section where you can request someone who has experience with special needs.
Local colleges often have programs (such as nursing, education or even social work) and students are looking for side jobs and experience relating to their major.
Contact local agencies and ask for their recommendations. Sometimes you just do not know all that is available.
READ: THRIVE NOW BLUEPRINT: SELF-CARE AND SUCCESS STRATEGIES FOR PARENTS OF SPECIAL NEEDS CHILDREN
Change your perception of self-care
We special needs parents often roll our eyes at the many articles out there telling us how important self-care and getting time to ourselves is.
We are well aware of the benefits of alone time, but it’s just not our reality that we can take off for a mani/pedi with our girlfriends or attend a happy hour with our co-workers on a whim.
However, there are some small changes we can make in our day to better take care of our mental and physical health.
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Often times we just need to ask and be specific with others about our needs. It’s not easy, but we cannot navigate the journey of special needs parenting alone.
Special needs parent isolation is very real and very debilitating. If you know a family with a special needs child, don’t forget about them.
If you are unsure how you can help, here are some quick and easy tips:
RELATED: HOW TO SUPPORT SPECIAL NEEDS PARENTS
Bottom line is we need each other. We need help. We need support. It takes a village, and special needs parents especially need that community effort to prevent isolation, overwhelm and burnout.
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50 Comments
This is so good! I hate to say it, but my self care has been going to the grocery store by myself. My husband and I tag team so much that we maybe get 2 date nights a year. It’s pitiful.
And I love my friends, but most of the time I’m so exhausted, I’d rather stay home. I have a coffee date with friends tonight for a kind of Bible study, but I just want to crawl into bed until it’s time to get up for work tomorrow.
Oh yes, the tag team has been our approach for years. It’s tough to ever find time for the two of us to have a date or even talk about anything but the kids and the schedule!
I hate to admit that I often cancel on plans I do make because I’m just too tired and the thought of going out and having to be social is painful! I know I need it, and I’m usually glad once I do go out, but sometimes it’s very tempting to just bag it and stay home instead. I’m making more of an effort lately, but the winter months are especially difficult!!!
Hello Laurie
We are a group of parents who put together a small “What’s On” Guide for parents with special needs parents in Aberdeen, Scotland. Please can we print this article in our magazine? It really resonates with many of us. Keep writing – your work is wonderful! 🙂
Hi Phionna – please feel free to email me so we can discuss.
Such a great article. You touched on so many important aspects….thank you. My husband and I having been parenting our special needs son for almost 30 yrs. …it has been lonely..but worth it!!
Hi Carrie – I”m so glad you and your husband have each other. It can be lonely, but know you are not alone!
I so appreciate your article. I have a child that doctors have been giving the run around to give him a diagnosis, due to the fact that if he is with them by his self he is fine. The second you put him with 2 or more kids , the second something goes wrong or not his way, we have major anger go flying in all directions.
I feel so isolated. My husband works oilfield and is on a 14days on and 7 off schedule. I feel like an only parent. I have 4 kids ages 9,7,6, and 1. We moved about every 2 years, where the jobs takes us, so building friends that understand and are willing to help and deal with it is hard.
Thanks for this article.
Amber, I SO can relate that’s my husband and I also, too tired to go out , but yet need a break. I work but it just never seems enough time to get things done @ home or @ work. it would be nice if I could find some parents in the south metro in Mn that also have kids with autism.
I never appreciated that there was a PTSD to having a child with a special needtill I read this . 15 years in and with ever changing diagnosis I feel I am suffering from the above.
Another note I would add through experience (bitter) you can become a groups “project” I was at risk of being brain washed by a local “Christian” group that helped me – but I felt I had to repay by having reading in my house etc… my mum stepped in and told them to go away.
I have also been at risk from do gooders that have an alternative agenda to helping me. I was/am vulnerable.
Stick to people you know and try to find out more about local peeps who wish to befriend you is my advice x
Yes, when I read that study that said it was similar to the PTSD combat soldiers experience, it was an “a-ha” moment. I’m not surprised at all. I’m sorry you had that experience with groups that had other agendas. We are very vulnerable when we are desperate for help and a break. I hope you find the support you deserve.
Wow! This is so spot on!
Thank you for writing this.
This article helped me feel not alone. I have been using a therapist because my child’s special needs are not obvious but very real. She has a number of diagnosed mental health problems that wreck havoc on all our lives and asking for help only served to increase my stress. This is because I have been told to parent my child and she would be fine. I have been accused of heinous abuse due to her delusional episodes yet there was never any harm to her. I have been told I am unfit, inept, permissive. My child’s violence has resulted in injury to my property and myself and I have been told it’s my fault and I deserve it because of how unfit I am. No one deserves violence or abuse but my child does it because of her struggles, not out of malice. Now, after 15 years, I have lost my spouse, a good portion of my friends, found no one I could trust and am so sick and exhausted. When my therapist suggested I had PTSD I couldn’t wrap my head around this. This helped me just not to feel alone and the PTSD reference helped connect me to what my therapist has been saying. Thank you for that.
Yes, the symptoms are similar to combat soldiers’ PTSD. It’s the state of hypervigilance a lot of special needs parents live in. I’m so sorry for your losses and tough times. I’m glad that this article made you feel less alone and helped you to better connect with your therapist. Take care of yourself!
This is so true. It’s even so much more true when your special child dies after her care required your every thought, decision, time for 24 yrs! It took me at least 20 yrs to say, “ It is Well With My Soul”. Will it take another 20+ yrs to say the same? 💔💔
I’m so sorry for your loss, Marji. Take solace that it is well with your soul. Grieving is a process – be gentle with yourself.
Thank you for this article, I needed it especially to share for family, friends etc.. so they might have some understanding of how my sons incident has greatly impacted both his and my life.
Short story is a I made a bad decision 23 months ago in what I thought was keeping my then 17 ur old son safe turned out to be out worst nightmare
I allowed him to experience alcohol at hone where I just knew he would be safe it wasn’t much and I figured well he will do it elsewhere at least he is here and I will watch him, although I rarely drink I understood being a teen.. what I never thought of was he had a powerful weapon sitting right there with him. I went to bed only to be woken an hour and a half later by my then boyfriend of 11 years as he had just gotten home and heard a weird sound coming from my sons room once I got the door opened there was my beautiful bright popular son lying on the floor in a pool of blood, he had shot hinself in the face with a 12 gauge shotgun. They have him a 1 % chance to survive well he did and not only did he survive he walked out of the hospital 10 weeks later. However he only has one eye and is blind in it, he took out most of his frontal lobe and now has since devotions grand mall seizures. Although he does well and can completely communicate make decisions etc.. he can never be left alone because of the seizures, he is slower than he was before as in it takes him longer to complete a simple task as going to the bathroom even though he does it alone it can take 10 min because he has no concept of time. My bf decided we were an inconvience after 13 years together and told us he wanted us out so now I am all alone. Family is non existent and not to mention the guilt I have and the ptsd from seeing my son like that a sight I can and will never un see. Life has changed I can no longer just run to the store as ppl stare and honestly I’m afraid of my reaction. Literally by the grace of god externally all that is missing is his nose, and 4 teeth he has both lips, chin eye brows and even eyelids we will never know the truth as to why happened but we can prove the gun was not in his mouth or under his chin however I believe in my heart that for whatever reason he got mad and the alcohol fueled it and in a quick moment he thought about it and changed his mind. He literally had no reason he was going into the marines, he was popular both with the girls and had a lot of friends. Only he and god knows what happened but ie as we knew it is over and it will never be the same. .
I am so sorry to hear this. Please remember to take care of yourself and try to connect with others.
Mrs Laurie,
I would like to personally thank you for writing this article and sharing it for others to try to begin to understand what, not only the parents deal with every day, but those of us who have, a you call it, a “Special Need”.
I just turned 44 on the 17th of June. I was diagnosed with an incurable illness in October 2006. I believe it was something I was born with. I now realize it is a Gift from God. Although I have my bad moments throughout the day, I use it to help others He sends to me or sends me to help them. The illness is called Dysautonomia. It affects the Autonomic Nervous System of the body, which is the system of the body we have no control over.
I can relate to all you have written about and I can see these same things you talk about in my parent’s lives. They are both retired teachers/coaches in Limestone County in Alabama. It has been a very large adjustment for them, myself as well as all of my family. I also have 3 nephews who are autistic. I have some of the symptoms of being autistic as well. I also deal with some PTSD from my time spent as a volunteer firefighter.
I would like to let others know that no one has to ever suffer alone. It is difficult to adjust to a new lifestyle. I went from a full time salary plus commissions job to not being able to work and from being able to drive whenever and wherever I wanted to not being able to to drive at all. I have to rely on my family and a very few friends to take me to places I would like to go and to all of my doctors appointments.
I’ve become a more positive, religious person and realizing to be more understanding of other people’s situations and lives. You have touched my heart and I will be sharing your article with many others from all around the World.
I’ve been blessed to have an unconditional loving, understanding, and supportive family. The journey has been difficult so far, however I know God still has a purpose as well as a reason for me to be here.
To all of you parents who have a “Special Needs” child, I salute you all and pray you never give up on yourself nor your child.
We are all “Special” in His Eyes. He just made some of us “Limited Edition”. He doesn’t make mistakes. He is a perfect God. He is not going to start with myself, you nor your child!
God bless you all and I will see you all in my prayers.
I know this story all too well. Another place I have found friends and support is waiting rooms at therapy. A lot of the parents there are going on similar journeys and understand exactly what you are going through.
I’m your neighbor at #DreamTeam this week.
Yes, I have met some wonderful people in waiting rooms. That is very true! Thanks for stopping by and commenting, #DreamTeam neighbor!
It’s hard to raise kids with special needs. I’ve been lucky to have people around me that help and most importantly, understand my struggles.
It is a difficult job which is why doing it alone can be so isolating and overwhelming. I am glad that you get support from those around you. You are lucky, indeed!
This article is brilliant, I’m still not sure where about does autism/adhd falls , but it’s definetky not like other children. It is difficult to manage and your article did seem like a little light that was much needed. I have only recently learnt about the importance of giving myself some alone me time, and it has been helpful! Lovely article very well written and very helpful. Xx thankyou
Hi Huma – my son will be 14 and every single age and phase has been different. I’m glad that you are giving yourself alone time. It’s so important!
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My older sister and myself have begun caring for our special needs little sister in April of this year after our mom’s sudden death from ovarian cancer (yes, the silent killer). We have had to adjust our lives in order to provide her the utmost loving care that only family members can give. Schedules are always open ready for a trip to the Dr or hospital. Our anxiety levels are sky high because there are no books reassuring us everything we do in her best interest is the right thing to do. My sister and I live 4 hours from each other but I put my life on hold during the summer to be with my little sister and care for her while my older sister works. I feel it’s the right thing for me to do so my older sister isnt feeling all the pressure alone. We are committed to be there as provider and protectors for our little sister. We are her only advocates concerning her health and well-being. I can only hope that our mother is proud that we sisters are all together and most importantly my mom knows we will be there for our baby sister. We love her and we have even gotten power of attorney for medical and financial authority in which we share jointly. This journey thus far has been lifewithasideoftheunexpected. 2019 here we come! Sincerely.
My condolences about your mother. I’m sure she is so proud of you and your sister. God bless you for stepping up to take care of your sister who needs you. While this can be lonely and isolating, you two are doing it together. I hope for wonderful things for you in 2019.
This article needs to sent to every local authority to let them know just how bad parents of SEN children become stress. Stress is a killer. I’ve suffered nearly mental breakdowns because of my local authority.
Yes, stress is so detrimental to our health. Please reach out and connect with others, if you can. Just like much of our society, local authorities need to be educated. I hope you have a wonderful and peaceful 2019 full of positive connection.
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My son was born 38 years ago with, at that time, an unknown syndrome. He developed hepatitis B, (from a health care provider), was in NICU for almost 4 months, and became the kid with an ever-changing diagnosis. He was in and out of the hospital for the first 12 years of his life with grand mal seizures, pneumonia, crashing cortisol levels, etc., etc. He was diagnosed with ACC, SOD/ONH, seizure disorder, autism, VI, CP, and endocrine insufficiency. All rolled together: DeMorsier’s Syndrome. I was told he wouldn’t live past 1, 5, 10, 12, 15, 20, 25, 30. Now they say maybe 60.
Ummmm…PTSD and isolation in special needs/care parents is REAL. I relive things like 45 minute long seizures, and using CPR on my kid while driving. I still see the doctor that tried to start an IV with dirty fingernails…I can hear the beginning gasping breathing my kid makes from the other side of the house- and be next to him in an instant.
Little sounds trigger hyper-alertness, but it works for me in my other job, as an educator for visually impaired.
Hi Leslie – yes, PTSD is very real. Thank you for being an educator for the visually impaired and I’m sorry you experience PTSD and isolation. Please join us in the Facebook group if you have not already. It does help to interact with people who “get it”
I agree totally, raising a child with Special needs is and can be so hard, even family can pull away, which hurts more, we live in a small community and there is absolutely no support for parents with children that have Special needs and there’s alot here, I’ve even tried a get together like a support group in the community on our fb page and no one came , my daughter hasnt been invited to any birthday parties nothing no outside interaction with any child besides school, I’m exhausted and I do agree with the health being affected, my husband doesn’t do anything to help hes a workaholic and always has to be asked to do anything for our daughter, life is hard and it’s just me
It does make it more difficult when you are doing this solo. I hope you find some support – even if it is just a virtual group of other parents who ‘get it’.
This is all too relatable & a little bittersweet. It’s nice to know that others feel the same & that we’re all going through the same fight to access services. But the fact that friends drop away is so sad, I don’t know about you but as a blogger I experience a lot of targeted nastiness too (aimed at me, not my child) which makes that burnout a lot harder
It is very sad that friends drop away but it is a reality. Your life becomes so different. Wouldn’t it be nice if support and understanding were offered? I don’t get a lot of nastiness – but the isolation of realizing that you are left behind while others are ‘socializing’ hurts.
Wow. To the T! I’m hating myself now for looking forward to a tournament of my step daughter, and will be leaving my SNC with Grandma. There’s not much support here in NM for parents so I feel even more alone. And I’m one of those parents that hates asking for help. I’m already physically ill and I just don’t know how much longer I can hold on
It’s so difficult to ask for help. I don’t like it either and I’ve gotten into the habit of isolating myself instead. Trying to break out of it, though!
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Just thought I’d mention Buddy Break, in case you’re not familiar with it. I live in Oregon and once a month we spend a Saturday morning from 10am to 1pm looking after special needs kids to give parents a break. I know it’s not much, but it’s something.
Thank you. Sounds like a great option for parents!
We would get on well, Laurie. I just read your bio and thought, I would love to be friends with her! Great article – thank you! We have just moved to Georgia from Massachusetts and I am trying to figure everything out all over again. Friendships, socializing and me time have taken a back seat. Even though I have learned after 4 years how important refuelling myself is.
Natasha – I do hope you join our Facebook group so you can connect with many parents who ‘get it’.
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